Chemo for ILC

Leslie13

I had Femara as a Neoadjuvant therapy before my bi-lateral mastectomy. I have at least one positive lymph node, and had a bundle removed from my right armpit last week.

My Dr also installed a port for Chemo. I have no idea what kinds of chemo are given to women with Invasive Lobular Cancer. Our cancer is so different than IDC, so I'm curious as to how others are being treated. With my surgery completed except for some fat grafting, I don't expect radiation. It's a stronger likelihood that I've had some Metastasis. It would be very helpful to know what other's treatment is before meeting with my Onco on Thursday.

Thank you for your time

Racy

Hi, it is interesting that Femara is starting to be used more often before surgery. Which country are you in? Do you know how effective the Femara has been?

The chemo I had in 2011 was TAC. From what I read at the time, it is proven as a very effective treatment for ILC. It is a 'third generation' regimen.

Let us know what your oncologist says.

Smurfette26

My cancer was Multifocal ILC. I had 1 positive node.

I start 4 rounds of Taxotere/Cytoxan on November the 10th by drip into a vein.

No mention of a port for me, hoping my veins hold up.

I see the Radiation Oncologist after my first chemo so should know more about rads then.

I will also be having hormonal therapy.

614

Dear Leslie:

Good luck and I hope that you are healing well.  I also hope that you tolerate the chemo well.

Dear Smurfette:

Why don't you ask about a port?  The doctor can tell you the pro's and con's.  I did not have chemo.  However, I think that most people prefer to have a port because it is much easier for all of the tx. Good luck with everything.

mary625

Only four years later, and did not have Femara neo adjuvant. I am not aware of different chemo regimens for ILC, unfortunately. I had the a**kicker regimen of AC/T--Adriamycin + Cytoxan in 4 dose dense treatments then Taxol in 4 dose dense treatments. I had this neoadjuvantly, and I felt like it was working pretty well at the time as far as feeling the tumor decrease. However, the stats you see below were after chemo--still an almost 2 cm tumor and 10 lymph nodes with extracapsular extension. Maybe this will make you want to choose a different regimen! Haha.

Racy

An advantage of TAC is that it is only six treatments every three weeks, so it is over sooner than a lot of other options.

Leslie13

Racy, I'm in the U.S., in Oregon. If TAC works and and is a shorter regime than other chemos, I'm all for it.

I'm still recovering from my bi-lateral mastectomy done on 9/30, then the lymph node removal and port placement a week ago. Still taking pain meds, as the arm is quite painful. I know it should improve soon, but I'm soooo tired already.

I appreciate everyone's input as to what treatments you received and if they were successful. Anything else you can think of will be very helpful. I see Fasodex and Ibrance used too, and both these are types of endocrine therapies. Femara worked, but not that well. I'm not having side-effects like I was, and my Dr. said I was in the small group of people who don't respond as well as 80% of Neoadjuvant users. Hopefully, they'll do more imaging to see if this has metastasized and use a more personalized approach.

Sometimes it sux to have a cancer with so little known

Anonymous

I am also unaware of different regimes for ILC. I had AC, dose-dense, followed by 12 weeks of Taxol and then 6 weeks of weekday rads.

I loved my port and can't imagine not having one with the amount of chemo I had.

Claire in AZ

HawaiiMom

I am having TC for this sneaky ILC of mine. 6 cycles 3 weeks apart.

Leslie13

Good luck HawaiiMom with your chemo. What size were your tumors when it was discovered since you had only lumpectomies, instead of BMX surgery? Hopefully smaller than some of the rest of us.

I've taken in a lot of data and don't feel comfortable doing chemo yet. I just had BMX surgery and have a few micromets in my lymph nodes. Just feeling like I need more time to heal, along with more complete body scans. Guess I'm a believer that rebuilding my health is the best way to prevent tumor growth. I don't know how the rest of you feel right after surgery and other treatments, but I'm exhausted and fearful of taking my immune system down right now. If I have stage IV that will change.

Thanks for giving your input.

Anonymous

I am having my right-sided mastectomy for ILC on Tuesday Nov 10. Afterwards, I expect to have 4 cycles of Adriamycin & Cyclophosphamide, and then 4 cycles of Taxol & Herceptin, then 13 cycles of Herceptin alone. I hope to have my tissue expander changed for an implant at the end of the 15 month treatment. I am glad to hear some of you say that the port was a good thing... I've been feeling unhappy about needing one, especially for such a long period of time. But I have a vascular condition that makes a port necessary.

HawaiiMom

The mammos, ultrasounds and mri indicated two masses, marble sized. Surgeon told me not to put money on their size and she was right. One was 6cm and the other 10mm. Taken out Together, they were about 11cm total. Margin was close, went in for re-excision. Should have done mastectomy at that time. I probably will do that after this chemo is done, just for my own peace of mind.

Anonymous

sugar-and-spice, the port idea was new to me too, but when I talked to another girlfriend who had a port for her DD chemo regime, I was convinced. It was so much more convenient than getting stuck, turning black and blue, pain, not having mobility during infusion, not finding veins, etc. that regular IVs would have given me.

For me the port meant this whole business was serious and would take some months to get through. That scared me initially, but once i realized the convenience of having it, I was sold. I had no problems with getting it installed and no one saw it. I had it taken out in my doctor's office in about 15", so no big surgery to remove it.

Claire in AZ

ck55

I have to go with the pro port responses. It wasn't bad to put in, it was easy drawing blood and receiving the chemo, plus for the rest of my life I will only have one good arm to use for blood draws, IV, blood pressures, etc. I think without the port, my veins would have been even harder to access then they are now. I have one "good" one, and I think it is getting pissed off!

Cyndi

mary625

I just want to mention that there are some chemo drugs, Adriamycian is one, that would be extremely dangerous to have leak out through a blown vein into your body. I don't think it's really an option not to have a port.

Nomatterwhat

I had ILC/DCIS in my right breast and micro calcifications in my left breast.  I had a BMX and a port put in for my 4 rounds of TC and then 33 rounds of radiation.  I had no node involvement and no reconstruction.  I forced my surgeon to take out my port before I had radiation (four months after surgery).  Looking back I would have kept my port for at least one year, due to all the blood draws I had from all my doctors throughout the year. 

Annette_U

Well I had neo-adjuvant FEC ( 4 treatments every 3 weeks) then 8 weekly taxol treatments. Then mastectomy/expanders - 8 weeks later 36 days full breast radiation. I think FEC went well - did not feel too bad - just major constipation (TMI sorry). Was not that bad and the Docs say it shrunk my mass by 30% (over 6cm to start), also may have cleaned out a few nodes that were 1.3-3cm. 5 nodes- 1 was benign and the other 4 were larger then normal with so sign of cancer. I think Neo is great! and glad I had some time to prepare mentally for all the treatment without having to get over a double mastectomy while going through chemo - that would have made healing even slower.